Hurry Up and wait

Santi's Fontan has been postponed.
CHLA called us this week and Dr. Starnes is no longer available on October 16th. Santi will now have his surgery on November 6th.

Having something like this hanging over your head just weighs you down. We're as prepared as we're going to be and we are ready to face the Fontan. At the same time, I take comfort in knowing that it will happen exactly when it's supposed to.
So we will enjoy the next few weeks at home, make time for some more adventures and continue to keep Santi happy and healthy pre-Fontan.

There is no way to tell how long he will be at CHLA recovering after surgery. The quickest discharge I've heard of is 7 days (the amazing Zoe Lihn)! I'm prepared for a 2-3 week hospital stay. Anything less will be the most wonderful surprise. Santi will have at least 8 weeks of limited activity while his body heals. Can you imagine limiting the activity of a toddler?!

If you've ever spent any time with a two and a half year old, you know they have the attention span of a goldfish. Our generous and supportive friends have been sending the sweetest surprises for us to give Santi during his recovery. I imagine that even on the toughest days he will find something to smile about. BIG THANKS to our loved ones who have Santi in their thoughts and prayers and who have sent such thoughtful gifts for Santiago. We love you!